April 6, 2015
Its time to jump into the Way Back Machine! In my early posts I've talked more about my present day experiences since my diagnosis with ovarian cancer. Maybe now's a good time to tell the rest of the story!
It began a little over 2 years ago, in 2013. I found out that, at the age of 44, I was pregnant! The shocked quickly turned into sheer delight for both myself and Terry. Who would've thought we would receive such a blessing at this stage in our lives?? I am one of those women who THRIVE during pregnancy...I love every little thing about being pregnant. My pregnancy was confirmed some time later and I shared the news with Terry on March 6th. We laughed and started dreaming and planning. Sadly though, our dreams turned to heartache when I began miscarrying the baby the day after I told Terry of my pregnancy. Totally crushed, I decided to go to the ER just to be certain that's what was going on. While there, I was given an ultrasound to rule out an ectopic pregnancy. It was then that a small mass was found in the area of the fallopian tube and ovary. It was confirmed that I was definitely losing the baby, though, and that we would take a "watchful, waiting" approach with regard to the mass, which in this instance meant that I would have another ultrasound in a couple of months. If it was "just a cyst" it was figured it would just dissolve and go away. If it grew, then we'd go from there.
A couple of months later I had another ultrasound done. The "cyst" had grown from the original 2 cm to about 5 cm. I wish my alarm bells went off at this point but they didn't. My doctor seemed...concerned but not overly concerned. The word cancer came up in discussion but she didn't feel it looked like cancer. She felt that it would be fine to wait 6 more months and check it again. That seemed reasonable to us at the time, given that I didn't seem to have any major symptoms accompanying the "cyst". (Of course, knowing what I know NOW about ovarian cancer symptoms, I actually DID have them but dismissed them as other things.) So my next ultrasound would have been in November 2013. I say "would have been" because it in fact never happened. My doctor was out on medical leave and it never got scheduled. I'd forgotten about it since my grandson had recently been born and we were relishing being first time grandparents! Had I not lost our baby, our child and our grandson would've been 1 month apart in age, lol! So November and December came and went with no ultrasound.
In January(2014) a crazy weird and ironic thing happened that threw us into another tailspin. My 19 year old daughter came home early one day and complained about an unrelenting pain in her side and abdomen. She had taken some tylenol but felt no relief. You ever get a gut feeling that something is....not just not right...but just WRONG? That was me at that moment. I remained calm but inside was in total panic mode. You see, just a few years earlier my 19 year old niece had been diagnosed with stage 4 ovarian cancer (which she valiantly fought and beat!) and she immediately came to my mind. I KNEW this was what the doctors were going to say before we even got to the ER. When the ER doctor came in, she prodded my daughters stomach gently and muttered to herself as she turned and walked out "oh my god....its HUGE!" Face....meet brick wall! My heart just stopped in my chest! Everything, every thought, every feeling I had just whirled and whirled in my brain. She had some blood tests, ultrasound exam and a CT scan. Within hours, they told us to choose a hospital...she needs to be at a major hospital...we were told that she will be transported immediately. We chose the hospital and after conferring with the gynecologic oncologist there, it was decided that she didn't need to be transported by ambulance but would have to be brought in within a few hours. We could drive in together. We made hasty arrangements, grabbed together an overnight bag and hit the road. My daughter had her surgery. It went very very well but it seemed like an endless wait during her surgery. She was diagnosed with a low malignant potential tumor...a rare and not malignant form of ovarian cancer. Her tumor weighed 25 pounds and they drained it of just shy of 5 liters of fluid! She did not need any chemo or radiation and went on the have a great recovery. She has passed her first year follow up with flying colors...with no evidence of disease!
It was during her recovery when it occured to me to contact my local gynecologist and get that follow up ultrasound on my "cyst" since we missed that one in November. I had told my doctor about what had happened with my daughter and all of a sudden she was a lot more concerned. She got me in pretty quickly, in mid-February. The US showed that the mass had grown another 2 cm...now around 7 cm. At this point, I was also feeling some more symptoms too. Terrible low back pain and feeling full quickly....things like that. Given my nieces' and my daughters' ovarian cancer diagnoses, my doctor referred me quickly to the same gynecologic oncologist my daughter had. This was Dr. Gawd, whom you've read of in my previous posts. Dr. Gawd reviewed my tests and scans and felt that what we were looking at was "just a cyst". It was part fluid filled and partly solid. She didn't seem alarmed but given the fact that it was growing that we should definitely take it out. I agreed. Since it wasn't considered an emergency and since Dr. Gawd is the Director of the oncology department and very busy, the surgery date was set for early May (2014)....a full 2+ months away. Feeling no more concern that this was cancer, we left the office and waited for surgery day.
Within a week of that appointment with the gyn/oncologist I began having outrageous pain in my right side and I could now feel the weight and size of the mass in my abdomen. We live in the country with lots of dirt roads and driveways and pot holes everywhere and I could feel that mass BOUNCE. It was like feeling pregnant but only on one side. Weird indeed! I kept feeling this pain off and on for weeks, until one night it became so bad I could not breathe. My son and husband got me down the stairs and out to the car and took me to the ER as I was afraid the cyst had become so huge that it was literally torting (twisting) the fallopian tube which can be extremely dangerous. They did another ultrasound, said it looked fine, gave me pain meds and sent me home. This same event happened again a couple weeks later and they gave me another pain pill, with one extra, and sent me packing again. This time, we called in the troops and went to the hospital ER where my oncologist is, 2 hours away. I was admitted and the next morning had the surgery to remove the mass, the ovary and the fallopian tube. The mass had grown from 7 cm. to the size of a large grapefruit in a few weeks! After a couple of days in the hospital we were sent home. SO relieved to have that behind us. Now I could just focus on healing up and be good to go! This happened April 17th to the 19th, 2013.
I had my post-op follow up appointment scheduled for 6 weeks later with my oncologist. On that day, we went in expecting a quick exam to make sure I'd healed up well and be sent on our way. We were NOT expecting to get the news we got. Like my niece and my daughter, I also had ovarian cancer. Unlike my daughter though, mine was malignant. I was stunned. Why hadn't someone called me to tell me this before now??? I was pretty livid! But, can't go back. What do we do now? Basically, given my age and the fact that I was in my mid-forties a total hysterectomy was recommended...so that meant that I'd lose the other ovary (hello medically induced menopause!), fallopian tube, uterus, the omentum, the cervix and lymph nodes. At the same time she'd "stage" me, meaning how far had the cancer grown. This surgery was set for July 15th. So we waited and prepared for the next surgery.
To be continued.....
Monday, April 6, 2015
Sunday, March 29, 2015
The Teal Butterfly Challenge 2015- pictorial
March 29, 2015
Pictures that my friends took in my honor <3 Pictures I took of myself in honor of my loved ones who've fought (and even WON!) their battles. And pictures from others in the challenge that inspired me!
I dedicate this post to my dear friend and spiritual sister, Maggie...who's fighting her OC battle with grace, optimism and courage! You inspire me, my friend!
Here's how to join the Teal Butterfly Challenge to help raise awareness for ovarian cancer: Paint your nails any shade of teal you like. Shape your hands into a butterfly shape and take a picture. Get creative!! Then share your pictures on social media using the hashtag #tealbutterflychallenge. Tag 10 of your friends and encourage them to take the challenge...this event is ongoing through Spring of 2015! Have fun!
Pictures that my friends took in my honor <3 Pictures I took of myself in honor of my loved ones who've fought (and even WON!) their battles. And pictures from others in the challenge that inspired me!
I dedicate this post to my dear friend and spiritual sister, Maggie...who's fighting her OC battle with grace, optimism and courage! You inspire me, my friend!
Here's how to join the Teal Butterfly Challenge to help raise awareness for ovarian cancer: Paint your nails any shade of teal you like. Shape your hands into a butterfly shape and take a picture. Get creative!! Then share your pictures on social media using the hashtag #tealbutterflychallenge. Tag 10 of your friends and encourage them to take the challenge...this event is ongoing through Spring of 2015! Have fun!
Friday, March 20, 2015
On a Roll!
March 20, 2015
First of all, Happy First Day of Spring! I hope its bright, sunny and flowery where you are :) Where I am, we still have a good foot of snow on the ground. I may go out and dig off the flowerbed to see if those daffodils are coming up! If you don't have flowers blooming yet where you live, here's a pretty picture of some teal tulips to cheer you.
I thought I'd talk a bit about Dr. Savior's recommendations. We were in total agreement with him and felt that the ball was finally rolling. His first recommendation was having another CT scan to be certain that everything else looked fine...no other tumors or lesions, etc. The second recommendation was to remove the mass I had, that was discovered (and ignored) by Dr. Gawd. Before this was done, we would wait to make sure that the CT scan came back clean. If no other tumors or masses were present, then my surgery would be a day surgery and I'd be ready to roll again within a few days after that. If there WAS something else discovered we'd make a new game plan. He also recommended that I see a geneticist to rule out genetic mutations like the BRAC gene and others he mentioned but can't remember at the moment. I marvel at how FAST things move in this office!
A couple of days later, I'm at the radiologists office and getting ready for my scan. It was one of those dye-contrast ones. I had to chug 2 big bottles of delusionally named Berry Smoothie drinks, one the night before and one the morning of. As I drank the first one the night before I prayed that I wouldn't throw it up! It was disgusting. The good news is my prayer was answered and I didn't. We could keep a'rollin'! At any rate, I knew the process for this type of scan and it all went as expected. With one little hitch! I don't know if you've ever had a scan but those scan beds you lay on are designed for one purpose only. To make you look like a first class fool trying to get up off it! They are stainless steel and slippery. They are shaped like a trough, presumably to hold you securely and you don't roll off (a purpose that I can attest too that is quite successful). THEN, they put a SHEET on top of it which is akin to sliding on a slip n' slide from our childhood. The night before my scan I actually dreamed that I couldn't get off the scan bed because it was so slippery....not to mention that my abdomen is still so weak due to 3 major surgeries. I have no core strength to rely on. Anyway, the scan moved along uneventfully. The tech came and unhooked me from the IV tubes and told me "you're good to go." He turned and started to walk away. Naturally, my nightmare came true! For the life of me, I could not get off that table. Try as I might I slipped, flopped and floundered like a fish on a riverbank! After the 3rd attempt, I actually rolled back so hard I hit my head on the bed. I was SOOOOO embarrassed! The only thing that could've been worse is if my legs had gotten tangled in the sheet and I landed on the floor...so I guess I should be thankful! The tech had heard my head hit and whirled around as my feet flew up in the air and he quickly came and offered his arm to help me up off that man-eater. Thank goodness I was fully clothed. In slacks! I just grabbed my handbag and ran for the door, avoiding all eye contact and pretending that didn't just happen! Welcome to my world...this is how I roll. Literally!
Tuesday, March 17, 2015
Pleasant Surprises
March 17, 2015- the next steps taken to find a new gyn oncologist and get treatment.
As I mentioned in my last post, I had to find a new oncologist. It was worrying to me since my old oncologist had just discovered a new mass and I felt it needed to come out immediately. We ARE talking about ovarian CANCER here...but Dr. Gawd did not feel the need. So the search was on for someone new. In a happy surprise, it turns out the search was blessedly brief. After getting a referral from my local gynecologist, researching this oncologist online and getting glowing reports from a couple of friends who'd had loved ones treated by him, I agreed to set up an appointment with him, although I was still feeling apprehension and reluctant. This was just not a hassle I needed in my life right now but sometimes ya have no choice. The appointment was made and in less than a week, we were sitting in his office! That was another surprise. The speed with which this was accomplished was astonishing....with my last oncologist I'd typically have to wait 6 weeks to even get in to see her. I'd have to wait for days and days (if not weeks) to just get a phone call returned. Not good in the cancer-fighting world to my point of view. So, we got in quickly and my confidence slowly starts to build. Maybe this will turn out alright after all....
I had a few days to prepare for the appointment but I couldn't think of a darn thing to ask. I was so flustered by this experience. The thoughts in my brain spiralled like water swirling around a drainspout and the harder I thought the faster things swirled till I was just filled with overwhelming confusion. Finally, on the trip to Dr. Savior's office I started writing down questions fast and furious. I was still feeling very much on the defensive and like I needed to brace myself, kind of like when a parent prepares a firm stance with arms open as their toddler comes barreling at them! I was expecting another big hit similar to my former oncology office! Eventually we arrive at Dr. Savior's office and are greeted by the receptionist. She's on the phone but on hold. She smiles and whispers "Hi, I'm Mary Beth. You must be Melissa." I returned her smile while feeling my defensiveness lower a bit and my hopes rise a little. If the receptionist is this pleasant, thats usually an indication of what the doctor and rest of the staff will be like. Have you ever noticed that? Then a really funny thing happened...Mary Beth started laughing, looked at me and whispered as she pointed to the phones mouthpiece "I don't know WHATS up with their on-hold music but its making me wanna pee! I don't know if its sposed to be the sound of running water and a breeze through leaves or what but someone better get on the line quick before I wet myself!" She was just cracking up at her wittiness which in turn made me laugh out loud too. Humor really is the best medicine and I could feel myself liking this office more and more. These were my people! :)
Then nurse Kathy came out and called me in. She was so kind as she asked questions and had me bring her up to speed. She not only listened kindly to what my concerns were regarding my current health concerns but also to my gripes about how I'd been treated in the other oncology office. She was empathetic and validating. I felt like I'd gotten a gentle hug from an understanding grandmother. She had some wonderful resources, invited me to a support group she runs and got me on her email list so I didn't feel so isolated and alone in my journey. Wow! She's great too, I thought!
But I still had to meet this oncologist and I felt weary. I wanted desperately to like this guy ....to feel as though I could LIKE having him on my healthcare team. As bad as I hoped for it, I seriously doubted it would happen though. Doesn't it seem like you get one or the other....a really smart, educated and experienced doctor but seemingly no bedside manner, no sense of caring OR you meet a doctor who's quite personable and friendly, seems like a nice person but doesn't exactly instill confidence in you. Thats been my experience at least, and its what I expected in meeting Dr. Savior. I was cautious and guarded. But I was also determined to get my questions answered and since I had nothing to lose at this point I'd decided I was gonna let him have it both barrels. Beat him to the jump, so to speak. Before we started with my inquisition, he reviewed the information in my files and reports with me. He actually seemed shocked at the other doctors recommendations, as though they made no sense at all. Of course, I agreed wholeheartedly! He was also not happy that no further follow up testing was done to see if there may be some other considering factors. Yes, we agreed with him there too! He then outlined what his recommendations were and again we were in agreement. I'm thinking to myself "I think I like this guy!" Surprisingly, I felt my defensiveness melting away like an dropped ice cream cone on a hot sidewalk. Then he said, "I see you have quite a list of questions there, lets go over those." What?! He WANTED to here my questions? Cool....there's a new sensation! When I entered that office I was prepared to do battle...I was expecting this doctor to treat me just a shoddy as my former one had, thinking that this must just be how it is dealing with oncologists. But the weird thing was, I didn't feel defensive anymore. I really loved Dr. Savior's style and that of his staff....answering questions before the questions even arose, listening attentively to me, asking what I thought and felt about things...everything I'd hoped for but doubted I'd ever find. I looked over my list of questions and just smiled. Happily, none of them mattered anymore because everything had already been addressed. And in the nicest way possible! I was surprised that I wasn't gonna have to give it to him both barrels because THEY had given it to ME with both barrels...friendliness, empathy and professionalism all wrap up together. Let's proceed!
As I mentioned in my last post, I had to find a new oncologist. It was worrying to me since my old oncologist had just discovered a new mass and I felt it needed to come out immediately. We ARE talking about ovarian CANCER here...but Dr. Gawd did not feel the need. So the search was on for someone new. In a happy surprise, it turns out the search was blessedly brief. After getting a referral from my local gynecologist, researching this oncologist online and getting glowing reports from a couple of friends who'd had loved ones treated by him, I agreed to set up an appointment with him, although I was still feeling apprehension and reluctant. This was just not a hassle I needed in my life right now but sometimes ya have no choice. The appointment was made and in less than a week, we were sitting in his office! That was another surprise. The speed with which this was accomplished was astonishing....with my last oncologist I'd typically have to wait 6 weeks to even get in to see her. I'd have to wait for days and days (if not weeks) to just get a phone call returned. Not good in the cancer-fighting world to my point of view. So, we got in quickly and my confidence slowly starts to build. Maybe this will turn out alright after all....
I had a few days to prepare for the appointment but I couldn't think of a darn thing to ask. I was so flustered by this experience. The thoughts in my brain spiralled like water swirling around a drainspout and the harder I thought the faster things swirled till I was just filled with overwhelming confusion. Finally, on the trip to Dr. Savior's office I started writing down questions fast and furious. I was still feeling very much on the defensive and like I needed to brace myself, kind of like when a parent prepares a firm stance with arms open as their toddler comes barreling at them! I was expecting another big hit similar to my former oncology office! Eventually we arrive at Dr. Savior's office and are greeted by the receptionist. She's on the phone but on hold. She smiles and whispers "Hi, I'm Mary Beth. You must be Melissa." I returned her smile while feeling my defensiveness lower a bit and my hopes rise a little. If the receptionist is this pleasant, thats usually an indication of what the doctor and rest of the staff will be like. Have you ever noticed that? Then a really funny thing happened...Mary Beth started laughing, looked at me and whispered as she pointed to the phones mouthpiece "I don't know WHATS up with their on-hold music but its making me wanna pee! I don't know if its sposed to be the sound of running water and a breeze through leaves or what but someone better get on the line quick before I wet myself!" She was just cracking up at her wittiness which in turn made me laugh out loud too. Humor really is the best medicine and I could feel myself liking this office more and more. These were my people! :)
Then nurse Kathy came out and called me in. She was so kind as she asked questions and had me bring her up to speed. She not only listened kindly to what my concerns were regarding my current health concerns but also to my gripes about how I'd been treated in the other oncology office. She was empathetic and validating. I felt like I'd gotten a gentle hug from an understanding grandmother. She had some wonderful resources, invited me to a support group she runs and got me on her email list so I didn't feel so isolated and alone in my journey. Wow! She's great too, I thought!
But I still had to meet this oncologist and I felt weary. I wanted desperately to like this guy ....to feel as though I could LIKE having him on my healthcare team. As bad as I hoped for it, I seriously doubted it would happen though. Doesn't it seem like you get one or the other....a really smart, educated and experienced doctor but seemingly no bedside manner, no sense of caring OR you meet a doctor who's quite personable and friendly, seems like a nice person but doesn't exactly instill confidence in you. Thats been my experience at least, and its what I expected in meeting Dr. Savior. I was cautious and guarded. But I was also determined to get my questions answered and since I had nothing to lose at this point I'd decided I was gonna let him have it both barrels. Beat him to the jump, so to speak. Before we started with my inquisition, he reviewed the information in my files and reports with me. He actually seemed shocked at the other doctors recommendations, as though they made no sense at all. Of course, I agreed wholeheartedly! He was also not happy that no further follow up testing was done to see if there may be some other considering factors. Yes, we agreed with him there too! He then outlined what his recommendations were and again we were in agreement. I'm thinking to myself "I think I like this guy!" Surprisingly, I felt my defensiveness melting away like an dropped ice cream cone on a hot sidewalk. Then he said, "I see you have quite a list of questions there, lets go over those." What?! He WANTED to here my questions? Cool....there's a new sensation! When I entered that office I was prepared to do battle...I was expecting this doctor to treat me just a shoddy as my former one had, thinking that this must just be how it is dealing with oncologists. But the weird thing was, I didn't feel defensive anymore. I really loved Dr. Savior's style and that of his staff....answering questions before the questions even arose, listening attentively to me, asking what I thought and felt about things...everything I'd hoped for but doubted I'd ever find. I looked over my list of questions and just smiled. Happily, none of them mattered anymore because everything had already been addressed. And in the nicest way possible! I was surprised that I wasn't gonna have to give it to him both barrels because THEY had given it to ME with both barrels...friendliness, empathy and professionalism all wrap up together. Let's proceed!
Monday, March 16, 2015
...where it stops nobody knows. Or do they?
March 13, 2015- the continuing story from yesterday.....part 2.
Where it stops, nobody knows. Thats the funny thing about cancer...nobody seems to know when, where or IF it'll ever stop. You think and your doctors think (as it was in my case at least) that it'll just be one surgery to remove the "cyst" and ovary and you'll be good as new. Aaand...you're not. You find out it's malignant that means a total hysterectomy and staging surgery and THEN you'll be done. Good for another 100,000 miles, we joked! Aaand....you're not. At my 6 month check up, they find another mass, more tests, more lab work, genetic testing and surgery...and around and around and around we go again, and where it stops we don't know. But is that really the case, I've been asking myself lately? Do we really not know where it stops? Maybe it DOES stop sometimes and I just have to figure out when and where those times are.
Getting back to the continuation of my story...as concerned as we were about the discovery of another mass and the scope of what that could mean, for some reason we allowed ourselves (me and my husband who'd accompanied me to the appointment) to be lulled. Placated. Dismissed and disregarded. Why did we just walk out without putting up a serious objection to just leaving a mass intact for 6 more months? I asked myself that question over and over for weeks afterwards while I waited for my oncologist to get back from vacation and return my calls. The bottom line is this....I'm not a noise-maker. I'm not a squeaky wheel. I hate confrontation with anyone...but especially with my oncologist! I mean seriously....I'm putting my life in her hands, she opens me up with a scalpel for crying out loud....probably wouldn't do to insult her or tick her off, right? One thing I've learned through this journey is where one thing WILL stop...and thats being pushed around, dismissed, and not being listerned to. I am learning that I need to be an advocate for MYSELF because this experience with this particular oncology office has shown me clearly that THEY may or may NOT care enough to! As the saying goes, I need to fight like a girl! ...be a Teal Warrior!
Another reason we "allowed" this, although it WAS subconscious, is because it's difficult to face that fear again. I'd worked through and past the fears of an ovarian cancer diagnosis, the fear of chemo and losing my hair, the fear of dying and leaving loved ones behind (SO MANY fears come part n parcel with cancer). Fear is like a hideous demon...so ferocious that can leave us feeling like a quivering mess. Cancer is no joke! Maybe, if you've battled cancer, you can relate to that. Anyway, It was hard to accept that I may be having my first recurrence, that I'm going to need more tests, more surgery, and maybe even more aggressive treatments, like chemo or radiation, which up till now I have not needed. I'd figured out how to corral all those fears and put them in a box and put the box on a shelf....pushed way in the back to never be seen again. And now here we were being forced to take down that box and open it...to shake everything out (the fear, the emotions etc) and deal with it again! Scary business. And hard to face again. But here's the thing...the Fear Monster feeds on our fear! So this is another place where I'm saying STOP. No more FEEDING the fear....I'm literally giving my precious energy to feed the Fear Monster and that has to stop. I need to redirect that energy in positive and proactive pursuits....like ovarian cancer advocacy, healing, serving Jehovah with everything I've got and treasuring friends and family. But one thing is for sure...no more wasting time and energy on fear...or fearing fear, lol!
I also tend to be stupidly optimistic to the point of being a bit "Pollyanna"...and this is another place where I needed to say STOP....while I always want to maintain an optimistic and positive attitude towards things, I must remember to balance that mindset with REALISM....I've gotta be more realistic. For example, I realized that it is not ok for a doctor or her staff to treat me so callously. Its not. And it IS ok for me to say I am not happy with something...it is ok to speak up! Why are they even in the business of caring for people if they don't. So, henceforth I will be known as Melissa, the optimistic realist, not taking foolishness from nobody! I like that! ;) Understanding this will hopefully help me NOT to allow stupid situations that could have been avoided by putting my foot down or at least mitigate damages by balancing a positive attitude with realistic expectations. Like your oncologist listening to you....ok back to the story!
When we returned home from that disappointing follow up appointment my friends and family were all eager for an update. I plastered a grin on my face and brightly told them what the oncologist and her nurse said to me....with the same sweet smile, same lilting tone of voice, same "no big deal" attitude. "We'll check it again in 6 months." Needless to say, the reactions from everyone were identical and intense...."Oh HECK no!" they said. And then the barrage of questions that I SHOULD have asked but didn't, as well as some very strong recommendations to get a second opinion and ideally a new oncologist immediately! I am such a blessed woman. I have so so many people in my life who truly care about me....who truly understand my nature and how to offer help and suggestions that have made a huge positive impact in my life! The intensity of their concern was akin to being rolled over by a steam roller and believe you me, I got the message loud and clear, haha! The next morning I was on the phone with my oncology office staff (who continued to patronize me and make me feel as though I were being a drama queen as opposed to a women diagnosed with a deadly disease trying to get the care she needs). When I got nothing but guff from them and they had me thoroughly flustered to the point of tears, I hung up and said then and there, "Fine, be that way. I'll just find someone else better!" And I did with the help of my amazing local gynecologist Tina. She referred me to a new office and a new gyn/oncologist. Although I was ticked beyond words at my first oncologist, Dr. Gawds, and really afraid to have to interview a new oncologist knowing that time is of the essence, I tried to remind myself that this could be a blessing in disguise. But only time will tell. I'll share THAT experience in another post.
I guess that old saying "Around and around and around it goes, where it stops nobody knows" is a pretty fitting life analogy. It seems to reference the on and on-ness of it and/or the unpredicability of it and maybe even the neverending-ness of events. When I've repeated it in the past, I've always taken it to be said with a questioning tone, with an amount of doubtfulness connected to it, like it (meaning bad things) never will stop. But, as I've rethought it, particularly in connection with this recent life event I "hear" it differently....especially the STOPPING part of it....the fact is there is a lot in life that we can't control...around and around it goes....BUT there's a lot we CAN control....we CAN put on the brakes and remove any unquestionable thing we don't like or want...we can say "STOP that doesn't work for me" or "STOP I'm not ok with this"...and in these instances its not a negative but a positive thing, and empowering.
Where it stops, nobody knows. Thats the funny thing about cancer...nobody seems to know when, where or IF it'll ever stop. You think and your doctors think (as it was in my case at least) that it'll just be one surgery to remove the "cyst" and ovary and you'll be good as new. Aaand...you're not. You find out it's malignant that means a total hysterectomy and staging surgery and THEN you'll be done. Good for another 100,000 miles, we joked! Aaand....you're not. At my 6 month check up, they find another mass, more tests, more lab work, genetic testing and surgery...and around and around and around we go again, and where it stops we don't know. But is that really the case, I've been asking myself lately? Do we really not know where it stops? Maybe it DOES stop sometimes and I just have to figure out when and where those times are.
Getting back to the continuation of my story...as concerned as we were about the discovery of another mass and the scope of what that could mean, for some reason we allowed ourselves (me and my husband who'd accompanied me to the appointment) to be lulled. Placated. Dismissed and disregarded. Why did we just walk out without putting up a serious objection to just leaving a mass intact for 6 more months? I asked myself that question over and over for weeks afterwards while I waited for my oncologist to get back from vacation and return my calls. The bottom line is this....I'm not a noise-maker. I'm not a squeaky wheel. I hate confrontation with anyone...but especially with my oncologist! I mean seriously....I'm putting my life in her hands, she opens me up with a scalpel for crying out loud....probably wouldn't do to insult her or tick her off, right? One thing I've learned through this journey is where one thing WILL stop...and thats being pushed around, dismissed, and not being listerned to. I am learning that I need to be an advocate for MYSELF because this experience with this particular oncology office has shown me clearly that THEY may or may NOT care enough to! As the saying goes, I need to fight like a girl! ...be a Teal Warrior!
Another reason we "allowed" this, although it WAS subconscious, is because it's difficult to face that fear again. I'd worked through and past the fears of an ovarian cancer diagnosis, the fear of chemo and losing my hair, the fear of dying and leaving loved ones behind (SO MANY fears come part n parcel with cancer). Fear is like a hideous demon...so ferocious that can leave us feeling like a quivering mess. Cancer is no joke! Maybe, if you've battled cancer, you can relate to that. Anyway, It was hard to accept that I may be having my first recurrence, that I'm going to need more tests, more surgery, and maybe even more aggressive treatments, like chemo or radiation, which up till now I have not needed. I'd figured out how to corral all those fears and put them in a box and put the box on a shelf....pushed way in the back to never be seen again. And now here we were being forced to take down that box and open it...to shake everything out (the fear, the emotions etc) and deal with it again! Scary business. And hard to face again. But here's the thing...the Fear Monster feeds on our fear! So this is another place where I'm saying STOP. No more FEEDING the fear....I'm literally giving my precious energy to feed the Fear Monster and that has to stop. I need to redirect that energy in positive and proactive pursuits....like ovarian cancer advocacy, healing, serving Jehovah with everything I've got and treasuring friends and family. But one thing is for sure...no more wasting time and energy on fear...or fearing fear, lol!
I also tend to be stupidly optimistic to the point of being a bit "Pollyanna"...and this is another place where I needed to say STOP....while I always want to maintain an optimistic and positive attitude towards things, I must remember to balance that mindset with REALISM....I've gotta be more realistic. For example, I realized that it is not ok for a doctor or her staff to treat me so callously. Its not. And it IS ok for me to say I am not happy with something...it is ok to speak up! Why are they even in the business of caring for people if they don't. So, henceforth I will be known as Melissa, the optimistic realist, not taking foolishness from nobody! I like that! ;) Understanding this will hopefully help me NOT to allow stupid situations that could have been avoided by putting my foot down or at least mitigate damages by balancing a positive attitude with realistic expectations. Like your oncologist listening to you....ok back to the story!
When we returned home from that disappointing follow up appointment my friends and family were all eager for an update. I plastered a grin on my face and brightly told them what the oncologist and her nurse said to me....with the same sweet smile, same lilting tone of voice, same "no big deal" attitude. "We'll check it again in 6 months." Needless to say, the reactions from everyone were identical and intense...."Oh HECK no!" they said. And then the barrage of questions that I SHOULD have asked but didn't, as well as some very strong recommendations to get a second opinion and ideally a new oncologist immediately! I am such a blessed woman. I have so so many people in my life who truly care about me....who truly understand my nature and how to offer help and suggestions that have made a huge positive impact in my life! The intensity of their concern was akin to being rolled over by a steam roller and believe you me, I got the message loud and clear, haha! The next morning I was on the phone with my oncology office staff (who continued to patronize me and make me feel as though I were being a drama queen as opposed to a women diagnosed with a deadly disease trying to get the care she needs). When I got nothing but guff from them and they had me thoroughly flustered to the point of tears, I hung up and said then and there, "Fine, be that way. I'll just find someone else better!" And I did with the help of my amazing local gynecologist Tina. She referred me to a new office and a new gyn/oncologist. Although I was ticked beyond words at my first oncologist, Dr. Gawds, and really afraid to have to interview a new oncologist knowing that time is of the essence, I tried to remind myself that this could be a blessing in disguise. But only time will tell. I'll share THAT experience in another post.
I guess that old saying "Around and around and around it goes, where it stops nobody knows" is a pretty fitting life analogy. It seems to reference the on and on-ness of it and/or the unpredicability of it and maybe even the neverending-ness of events. When I've repeated it in the past, I've always taken it to be said with a questioning tone, with an amount of doubtfulness connected to it, like it (meaning bad things) never will stop. But, as I've rethought it, particularly in connection with this recent life event I "hear" it differently....especially the STOPPING part of it....the fact is there is a lot in life that we can't control...around and around it goes....BUT there's a lot we CAN control....we CAN put on the brakes and remove any unquestionable thing we don't like or want...we can say "STOP that doesn't work for me" or "STOP I'm not ok with this"...and in these instances its not a negative but a positive thing, and empowering.
Sunday, March 15, 2015
Around and around and around we go.....
March 15, 2015- This blog is a reliving of sorts, a retelling of events leading up to and during my journey with ovarian cancer. I'm a year into my diagnosis and treatment so many posts will be looking back, while intermingling with the present. It is my therapy...my mental and emotion release of what, when, where, why and how.
We woke up the morning of February 13, 2015, with a great deal of excitement! Terry and I looked at each other and smiled...it was time for my first 6 month post-op check up and believe it or not we were anxious to get the day started! We had it all planned out....get up and out the door early. Hit some stores before the appointment and have dinner out after my appointment....a weird sort of date day! The appointment with my oncologist wasn't until mid-afternoon so we planned on hitting one or 2 pawn shops on the way over to Dartmouth-Hitchcock,. It's one of Terry's favorite things to do. It helps break up the monotony of a 2 1/2 hour car trip, one way. As long as I had my Dunkies coffee and my book, I was a happy camper and happy to oblige! Well, dontcha know...it was one fool thing after another trying to get out the door....forgot our cellphones...back upstairs grab the phones. Forgot to check the online bank balance....run back in, do a quick check- "yup we're good"- back out to the car...."Nuts! Forgot to fill the tank!" Around and around it went until we were now going to be fortunate to even get there on time. So we drive like crazy folks across the New Hampshire back roads (cuz there's no direct route to ANYWHERE here, lol) trying hard to not go off the road or bottom out the car on all the frost heaves! Despite all the hassles we get there in one piece and on time. It was a crazy trip over but it didn't really matter. I was just excited to have this appointment, be told I'm doing great and be sent on my way. When you've gone through the trauma of 3 surgeries in 8 months....the pain, the emotional rollercoaster, the trying to adapt to your new normal as an ovarian cancer survivor and start to feel as though you'd actually SUCCEEDED....well, I guess I was just excited to hear those reaffirming words and get a well deserved pat on the back from my oncologist!
Because Dartmouth is a teaching hospital, you have to repeat yourself a lot...retelling how you've been feeling over and over and over...first to the nurse, then the nurse practitioner, then the resident, and THEN, at long last and when your mouth is as dry as a burnt boot, THEN you get to talk to your oncologist. Around and around and around we go....
I did share with the nurse practioner that overall I was finally feeling strong and in control with just a couple minor issues. I felt overwhelmingly happy to have made it through 2014....I was one of the "lucky" ones, got diagnosed early and had it taken care of quickly. Since the beginning of this year (Jan. 2015) I'd made a conscious choice to take my oncologist, Dr. Gawds' advice (name has been changed) and just LIVE! She had told me this was just a "hiccup" in the course of my life and that it was over. I was tired of living in fears shadow and ready to reemerge into the light a healthier, happier and cancer-free woman! So I did! I released the fear completely. I told the her that I'd been experiencing a few very mild symptoms that were similar to my original symptoms...like feeling fully quickly again and some low back pain. It's likely nothing, she assured me. I told her you are probably absolutely right but if you'd just make a notation in my file that I mentioned them I'd appreciate it. Which she did. All we had to do next was the physical exam and then we were done. Pat me on the back, tell me I did good and then off to our dinner at Molly's! Naturally, nothing in my life seems to go off without a hitch...and this was no exception. During the exam, the nurse practitioner very casually and sweetly says "hmmm....seems like you might have a teeeeny little cyst. NO BIG DEAL, mind you....but...you know....I'd feel better having someone with the letters MD after their name take a look at it." After she exits the room, my husband and I just looked at each other dumbstruck!! I felt as is I'd been thrown into a raging furnace as heat rushed over my body. I felt like I could hardly breathe, as if the nurse practitioner had sucked all the air out of the room as she closed the door! HOW on earth could this be happening, I asked Terry. This is not right. They told me everything was clear just 6 months ago. It was caught early and removed. I was told because this is a very rare and slow growing type of ovarian cancer that the chances of a recurrence was 10%-20%! Oh how I kicked myself for setting myself up for this!! I had no right at all letting myself believe that this was just a "hiccup"...at least thats how I felt at the time. I totally blamed myself for this fall and for the hurt and fear it would cause my family and friends when they heard the news. Lesson learned. All of these thoughts are running through my brain as I struggled to harness them. As I continued to lay there and wait my mind starts doing the preparations...."Ok, so another surgery's coming. Thats ok...you handily managed 3 surgeries last year. Hey! You're not even afraid of them anymore, so thats a plus! Next, we'll have to figure a "good" day to schedule it, I'll have to line up help with meals and cleaning, I can rearrange this and that for a later time...yeah, that'll work....." and around and around and around we go. Again.
By the time Dr. Gawd came in, I was all prepared for the news. I was prepared for her to tell me it has to come out. She did a little poking and prodding, and simply said "Yup. I feel it. Its a cyst. No big deal." ...and started to walk away. Before I had a chance to object or ask a question, the nurse practioner, who seemed moderately surprised thats all the doctor did, sheepishly asks the doctor "weeell, wouldn't you like to just take a quick LOOK at it?" Dr. Gawd obliged her but within another 30-60 seconds dismissed it as a fluid-filled cyst and told me we'd look at it again at my next 6 month check up. I was FLOORED! Wait...what? You want to LEAVE it in there?! I told her "No disrespect but thats exactly what we thought when the first one was found...and it was CANCER! And apparently it has spread!" She repeated what she'd just said as though trying to placate a small and indignant child, smiled and walked out the door. The nurse came back in and was oh so kind and reassuring, again parroting what the doctor had just said. So much so that we actually calmed back down and left smiling. I mean, hey...we're not the experts, right? What do I know and who am I to question her? Sometimes, talking to doctors feels like the ultimate act of futility....around and around and around we go! I've always hated merri-go-rounds anyway.
To be continued.....
We woke up the morning of February 13, 2015, with a great deal of excitement! Terry and I looked at each other and smiled...it was time for my first 6 month post-op check up and believe it or not we were anxious to get the day started! We had it all planned out....get up and out the door early. Hit some stores before the appointment and have dinner out after my appointment....a weird sort of date day! The appointment with my oncologist wasn't until mid-afternoon so we planned on hitting one or 2 pawn shops on the way over to Dartmouth-Hitchcock,. It's one of Terry's favorite things to do. It helps break up the monotony of a 2 1/2 hour car trip, one way. As long as I had my Dunkies coffee and my book, I was a happy camper and happy to oblige! Well, dontcha know...it was one fool thing after another trying to get out the door....forgot our cellphones...back upstairs grab the phones. Forgot to check the online bank balance....run back in, do a quick check- "yup we're good"- back out to the car...."Nuts! Forgot to fill the tank!" Around and around it went until we were now going to be fortunate to even get there on time. So we drive like crazy folks across the New Hampshire back roads (cuz there's no direct route to ANYWHERE here, lol) trying hard to not go off the road or bottom out the car on all the frost heaves! Despite all the hassles we get there in one piece and on time. It was a crazy trip over but it didn't really matter. I was just excited to have this appointment, be told I'm doing great and be sent on my way. When you've gone through the trauma of 3 surgeries in 8 months....the pain, the emotional rollercoaster, the trying to adapt to your new normal as an ovarian cancer survivor and start to feel as though you'd actually SUCCEEDED....well, I guess I was just excited to hear those reaffirming words and get a well deserved pat on the back from my oncologist!
Because Dartmouth is a teaching hospital, you have to repeat yourself a lot...retelling how you've been feeling over and over and over...first to the nurse, then the nurse practitioner, then the resident, and THEN, at long last and when your mouth is as dry as a burnt boot, THEN you get to talk to your oncologist. Around and around and around we go....
I did share with the nurse practioner that overall I was finally feeling strong and in control with just a couple minor issues. I felt overwhelmingly happy to have made it through 2014....I was one of the "lucky" ones, got diagnosed early and had it taken care of quickly. Since the beginning of this year (Jan. 2015) I'd made a conscious choice to take my oncologist, Dr. Gawds' advice (name has been changed) and just LIVE! She had told me this was just a "hiccup" in the course of my life and that it was over. I was tired of living in fears shadow and ready to reemerge into the light a healthier, happier and cancer-free woman! So I did! I released the fear completely. I told the her that I'd been experiencing a few very mild symptoms that were similar to my original symptoms...like feeling fully quickly again and some low back pain. It's likely nothing, she assured me. I told her you are probably absolutely right but if you'd just make a notation in my file that I mentioned them I'd appreciate it. Which she did. All we had to do next was the physical exam and then we were done. Pat me on the back, tell me I did good and then off to our dinner at Molly's! Naturally, nothing in my life seems to go off without a hitch...and this was no exception. During the exam, the nurse practitioner very casually and sweetly says "hmmm....seems like you might have a teeeeny little cyst. NO BIG DEAL, mind you....but...you know....I'd feel better having someone with the letters MD after their name take a look at it." After she exits the room, my husband and I just looked at each other dumbstruck!! I felt as is I'd been thrown into a raging furnace as heat rushed over my body. I felt like I could hardly breathe, as if the nurse practitioner had sucked all the air out of the room as she closed the door! HOW on earth could this be happening, I asked Terry. This is not right. They told me everything was clear just 6 months ago. It was caught early and removed. I was told because this is a very rare and slow growing type of ovarian cancer that the chances of a recurrence was 10%-20%! Oh how I kicked myself for setting myself up for this!! I had no right at all letting myself believe that this was just a "hiccup"...at least thats how I felt at the time. I totally blamed myself for this fall and for the hurt and fear it would cause my family and friends when they heard the news. Lesson learned. All of these thoughts are running through my brain as I struggled to harness them. As I continued to lay there and wait my mind starts doing the preparations...."Ok, so another surgery's coming. Thats ok...you handily managed 3 surgeries last year. Hey! You're not even afraid of them anymore, so thats a plus! Next, we'll have to figure a "good" day to schedule it, I'll have to line up help with meals and cleaning, I can rearrange this and that for a later time...yeah, that'll work....." and around and around and around we go. Again.
By the time Dr. Gawd came in, I was all prepared for the news. I was prepared for her to tell me it has to come out. She did a little poking and prodding, and simply said "Yup. I feel it. Its a cyst. No big deal." ...and started to walk away. Before I had a chance to object or ask a question, the nurse practioner, who seemed moderately surprised thats all the doctor did, sheepishly asks the doctor "weeell, wouldn't you like to just take a quick LOOK at it?" Dr. Gawd obliged her but within another 30-60 seconds dismissed it as a fluid-filled cyst and told me we'd look at it again at my next 6 month check up. I was FLOORED! Wait...what? You want to LEAVE it in there?! I told her "No disrespect but thats exactly what we thought when the first one was found...and it was CANCER! And apparently it has spread!" She repeated what she'd just said as though trying to placate a small and indignant child, smiled and walked out the door. The nurse came back in and was oh so kind and reassuring, again parroting what the doctor had just said. So much so that we actually calmed back down and left smiling. I mean, hey...we're not the experts, right? What do I know and who am I to question her? Sometimes, talking to doctors feels like the ultimate act of futility....around and around and around we go! I've always hated merri-go-rounds anyway.
To be continued.....
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